When Ewa was 21 years old and her future was ahead of her, she fell ill with schizophrenia. – The diagnosis was a shock – says Marta, Ewa’s mother. And he adds: It’s like living on a delayed fire bomb.
- When Ewa left the hospital, we went to dinner at her favorite restaurant. She was sad, as if absent, which I blamed on illness. We were sitting at the table, and she suddenly said, “None of my friends got interested in me during this six-month period, they wouldn’t even notice if I died.” My heart skipped a beat
- The friends to whom I told about my daughter’s disease asked how to help me, they felt sorry for me. However, this is a difficult situation to help. I heard from one of my friends that he felt sorry for my crippled child
- Many people, when they find out that they have schizophrenia, give up fighting for themselves. They are affected not only by the stigma of their surroundings, but also by themselves. They assume that they will not be able to cope in life, that they have no right to love, to start a family, that they will not be able to survive in any job or at any university. They make a decision to live on the fringes of society
Anka Sadowska: When did you notice that something was wrong with your daughter?
One day I came home from work and found all the extension cords and chargers stacked on the table. The daughter said she had to save us from electric shock. She also said that our cat is deadly and she taps her claw as a warning that I must lock myself in my room because he wants to kill me and she will deal with him somehow. Eve had acted strange before. She was agitated, easily nervous, unable to sleep. But it wasn’t until that evening, when the installation of extension cords was waiting for me, that I realized that something was really wrong with it.
This condition is called psychosis.
Yes. Psychosis can be compared with sleep. A person who experiences it may feel persecuted, feel that everyone is plotting against him, that they hear his thoughts. In a dream, we often run away from someone who is chasing us. People in a state of psychosis have this feeling of being trapped in the waking state. It is difficult to communicate with them, because their experiences, the way they perceive reality and react to it, differ from the way healthy people view the world and themselves. I realized I had to act fast. I packed a few essentials, called a taxi and my daughter and I went to the psychiatric hospital in Sobieskiego Street. There, with the doctor, we waited six hours for her to sign the consent for the treatment. I didn’t want her to go to the ward without her consent.
What did you feel
I was horrified. It is difficult to go home when a loved one has to stay in a closed XNUMX/XNUMX ward for people experiencing psychosis. Imagination works by suggesting macabre images. What if she’s scared and can’t sleep? What if she feels abandoned? What if he does something bad to himself? When I asked the doctor who was leading her, how I could help my daughter, she replied – be patient
How did Ewa take the fact that she ended up in a psychiatric hospital?
When I came to see her the next day, her whole bed was wet because she had spilled a bottle of water on it. She was nervous, shaky, was running around the ward.
I brought her some juice and some fruit. Everything was immediately thrown into the garbage. She didn’t want to talk to me.
What did you do?
After returning home, I read on the internet about psychosis and what can help me get out of it. I learned that a person who experiences it very strongly absorbs the emotions of the environment. When I came to my daughter, I tried to be calm, optimistic towards her and talk to her as if nothing had happened, to treat her like a healthy person. The most difficult to bear for me was the fear that she might never come back to reality.
How did you get to your daughter?
It is important to be with the sick person, to make him feel that someone is waiting for him, that he is important to someone, and to come up with an idea how to wake him up from psychosis. My way was to dance. I played songs on the phone and we danced in the therapy room. Sometimes other patients joined us. When Ewa felt better and started getting home passes, I took her for long walks to the Botanical Garden in Powsin. I hoped that nature, flowering shrubs and trees would have a therapeutic effect on her.
Did the drugs help? Have they had any side effects?
It is important to find an experienced doctor who will quickly come up with an idea which drug will work best in a given case. Such experienced doctors work in the ward for people with a history of psychosis. The first medications in the case of Ewa ended in a fiasco. They stiffened her, she spoke in a way that was difficult to understand. Fortunately, the next drugs worked, they were composed so well that you can’t see that Ewa is taking them. Side effects can be the compulsion to walk in place, the disappearance of menstruation, skin problems, lethargy, problems with memory, concentration, problems with metabolism. Many people taking psychotropic drugs start gaining weight very quickly.
How long was Ewa in the hospital?
Three months in the 21-hour unit for people with psychosis and three months in the relapse prevention unit. In the latter, patients have therapeutic classes for half a day. They learn to relax, they learn about calming breathing techniques, they have individual and group therapy where they talk about, for example, assertiveness and setting boundaries. In the afternoon, they can go for a walk, to the movies, do some shopping. They must return to the hospital before XNUMX, because then the branch is closed.
How did you combine taking care of your daughter with everyday functioning? After all, you work full time.
It was a huge challenge. On weekends, which I have free, I was with her from morning to evening. I came at 10 and I sat with her until 20 or even 21, if the ward staff didn’t mind. It was worse on weekdays, because I work from 9 am to 17 pm I used to visit her every day in the late afternoon when she was already very tired all day.
At work, were your bosses aware of your current situation? Were they on your arm?
I asked my boss to let me leave work at 16. When I explained why, she not only agreed immediately, but also took some of my responsibilities off me.
Could you count on the support of family and friends?
My mother, who visited her in the hospital when I was at work and one of Ewa’s aunts, helped me look after Ewa. She was driving her daughter and me to and from the hospital when Ewa started getting passes. It was extremely helpful, because Ewa’s stay in the hospital started in the winter and thanks to that we did not freeze at the stops. This aunt visited Ewa several times. She brought her freshly squeezed fruit and vegetable juices, which was great because the hospital diet was low in vitamins.
Have you told your friends that your daughter is sick? What reactions did you experience?
I only told a few people about it. If I could turn back time, I would only tell my mother and aunt who was visiting Ewa about it. I don’t want my daughter to be associated with mental illness. The friends to whom I told about this asked how to help me, they felt sorry for me. However, this is a difficult situation to help. One of them invited me to dinner. Throughout the evening, we talked about everything, except Eve’s illness. For a few moments, I was able to focus on something else. This dinner was a great form of support. However, I also encountered an unpleasant reaction. I heard from one of my friends that I felt sorry for my crippled child. Mental illness is not a disability. If you compare it to anything well known, it is diabetes. Are we afraid of diabetics? Do we think of them as crippled people?
However, it is probably easier to accept the diagnosis of diabetes than schizophrenia.
When Ewa left the hospital, we went to dinner at her favorite restaurant to celebrate it with something tasty. She was sad, as if absent, which I attributed to illness. We were sitting opposite each other at the table, and she suddenly said that she was sorry that none of her friends had visited her in the hospital, although she wrote to several people that she was there. – You know, nobody got interested in me during this six months, my friends wouldn’t even notice if I died – she said. My heart skipped a beat. I began to try to console her.
I said that you can build a new circle of friends, try to surround yourself with people for whom it will be important. I said that he can sign up for some classes or workshops and meet nice people there. When we got home in the evening, my daughter showed me her epicrisis. It is a document that every patient leaving the hospital receives. It describes his behavior during hospitalization, lists all the medications he received with their doses, and the diagnosis made by the doctor who treated him. The diagnosis of schizophrenia shocked my daughter, she was devastated, surprised. She refused to accept her. She said she was worried that she would never have a boyfriend, that she would fail in college, that her surroundings would reject her.
In the opinion of both healthy people and patients experiencing crisis, schizophrenia is the worst possible diagnosis. When we learn that we are dealing with someone with schizophrenia, we feel anxious and insecure. And what about people who, while reflecting in the mirror, see a person suffering from it? People find it easier to accept depression and bipolar disorder.
Schizophrenia is associated with something unpredictable, dangerous to the environment, incurable, with a split personality.
Many patients, when they find out that they have been diagnosed with schizophrenia, give up fighting for themselves. People experiencing a mental crisis not only suffer from stigmatization of their surroundings, but also stigmatize themselves. They assume that they will not be able to cope in life, that they have no right to love, to start a family, that they will not be able to survive in any job or at any university. They make a decision to apply for a disability certificate and a pension, they live on the margins, under the care of their family. This diagnosis is feared not only in healthy people, but also in those to whom it is made.
Ewa was devastated by the diagnosis. And you?
Most of all, I tried to calm my daughter down. I told her diagnoses were just medical terms, drawers to put patients in so she knew how to treat them. They are information for a doctor who takes care of a person with a crisis experience after hospitalization. They are also placed so that the hospital receives money for treatment. After all, the National Health Fund would not pay someone who is healthy for a several-month stay in a hospital. The psychosis my daughter experienced also happens to people who are diagnosed with bipolar disorder. This disease consists of severe mood swings – feeling euphoric, known as the mania state, and alternating with extreme sadness, i.e. extreme depression. It is easier for people to admit that they have it. We know that Wojciech Młynarski, Marek Grechuta and Zbigniew Herbert struggled with bipolar disorder. Known Poles suffering from schizophrenia were Rafał Wojaczek, a poet who committed suicide, and Jerzy Krzysztoń, who wrote a book about his illness called “Obłęd” and also passed away taking his own life.
When I found out that my daughter suffered from schizophrenia, I was primarily afraid that she would have thoughts of suicide. In the library, I found the book “Living with Schizophrenia – A Guide for Relatives” by Kim T. Mueser and Susan Gingerich and I found some tips on how to help. Among other things, talking about the positive aspects of life, about what has happened to her today. The authors also suggested to set goals for the person who is sick, small, such that you can immediately see the effect, such as washing the floor or washing the floor, and praise her for coping with them.
What exactly is schizophrenia?
Hides many secrets. We don’t really understand what this disease is all about. It manifests itself in many ways. Each case is different. Its exact causes are still unknown. It is a suffering that is experienced in loneliness, because the sick person cannot share what is happening with him with others. Schizophrenic sadness was brilliantly described by Antoni Kępiński: “It is not a sadness of a black abyss, but a sadness of a burnt steppe, an extinct city, a lifeless planet. Nothing can happen in the void, but it can also be filled with fantastic imaginary characters and scenes. There may be outbursts of fear, anger, ecstasy, but it always remains an empty space ”.
What myths have you encountered about her?
There are tons of them. For example, associating it with something dangerous. In movies and books, the words psychopath, schizophrenic, serial killer are used interchangeably as synonyms. Meanwhile, people with schizophrenia rarely commit crimes. They are the most dangerous for themselves. Fear of the world, being lost in it, often pushes them to suicide.
It is also a myth that people with schizophrenia are above average intelligent or artistically gifted. This is a disease that can equally affect a poet with enormous intellectual potential and unprecedented sensitivity, as well as people who do not have such qualities. The most famous people with schizophrenia are: Nobel laureate in economics John Forbes Nash, science fiction writer Philip K. Dick, founder of the Pink Floyd music band Syd Barrett, and Brian Wilson, leader of The Beach Boys.
If someone we know is affected by the disease, we can find out more easily than if our neighbor has it. Schizophrenia is sometimes called the royal disease because people think that people with schizophrenia experience rich and unusual delusions. But usually it is a terrifying struggle with memory fading, with a feeling of being isolated from the world. It is also a myth that schizophrenia is incurable. In the case of a third of cases, it ends up in one episode.
What could be a “trigger” for an episode of illness?
Experiencing difficult situations strongly. Schizophrenia usually appears in people entering adulthood between the ages of 16 and 25. It is then that we experience relationships with people very intensively, the study session, problems with finding a job. The disease starter may be a heartbreak, sleepless nights while preparing for the exam, stress, permanent exhaustion, taking drugs. Its first symptoms can be confused with depression. The sick withdraw from social life, become passive, they lack energy. Psychiatry talks about positive and negative symptoms. The former are those that do not occur in health, such as hallucinations, i.e. hearing, feeling, seeing things that are not there, that other people do not perceive. Negative symptoms include the absence or disturbance of normal thought and emotional processes. These may be withdrawals from speaking, apathy, reduced ability to experience emotions, lack of empathy.
What is your relationship with your daughter like after you leave the hospital?
Our relationship has always been very strong. We both know that we are united by unconditional love. The hospital and her illness changed nothing. We are still strongly connected. When Ewa left the hospital, we discussed what to do to minimize the risk of another crisis – to keep an eye on your rest, fall asleep at 22, eat regularly and take care of your emotions, learn not to worry about difficult situations that life brings. Treat them as something to deal with, not as a source of stress.
How is she now?
Now there is a session in her studies. Ewa passes exams, which is associated with a lot of stress. I sit a bit like a bomb because I’m afraid it might trigger another psychosis. Young people often have a relapse during sessions.
Has the disease changed your daughter? What kind of girl is she now?
She is calmer, she has greater awareness of herself. In psychotherapy, he learns to control strong emotions, distance himself from stressful situations, and the ability to set limits. She tries to build a group of friends, do things that make her happy.
Has this experience changed you as a mother? How do you approach your parenting?
Many parents of people with schizophrenia fall into the trap of overprotection. They treat their adult daughters or sons as disabled people, they try to do everything, they want to know what they are doing, they remind them to take medications, they remember about appointments with a psychiatrist. The doctor who was in the hospital with Ewa’s attending physician told me not to try to talk to my daughter about the disease, not to ask how I felt, to leave it to the doctors. I’m sticking to it. I only take up this topic when my daughter wants to raise it. I try to give her freedom, I do not impose myself with instructions, I support her in her choices, I take care not to control her. I suggest what, in my opinion, would be good for her, but I am not pushing her to follow this path. We live together so I know what’s going on with her. Recently, she decided to move to a friend’s house for two weeks to look after her cats in her absence. I’m afraid of these two weeks, but I know I shouldn’t have infected her with this fear.
People who received psychiatric treatment are stigmatized in our society. This is perhaps the most severe in the case of young people who have not yet started living on their own account. The environment does not trust them, and they may lose faith in their own strength. What can be done to prevent the disease from destroying the chance for the future?
There are offices for people with disabilities at universities. Students who have experienced a mental crisis can come there for help, negotiate, for example, an individual course of study so that they do not have all the exams accumulated. It is also worth talking to lecturers, asking them to, for example, give more time to write a thesis. In the fight against this disease, drugs are not enough. It is important to build a support group composed of relatives and the doctor. Psychotherapy can be very helpful, where the patient learns to build bonds and look for ideas for himself.
Mental health, according to Freud, is to love and work. If we start trying to build happy relationships and find a way to fulfill ourselves in study or work, it will be much easier for us to recover. More and more psychiatrists, psychotherapists and psychologists approach the patient with emphasis not on the disease they are experiencing, but on the healing process. Behind each recovery, there is a different person who believed in the patient that he can return to good form, not to lose the roles of mother, brother, and co-worker.
An open dialogue approach is becoming more and more popular, in which a mobile team of specialists travels to the home of a patient experiencing crisis to work with him and his family. Conversation, openness of the environment, love of loved ones is the best remedy for mental crises. Now the system of psychiatric care is being changed from one focused on isolation in the hospital to developing community treatment – close to home, including the treatment of relatives, if possible without hospitalization. Last year, 27 Mental Health Centers were established in Poland, which you can come to without waiting in line, without signing up for an appointment, from the street, to get help. If I had known about these places, I would have gone with Ewa there first, not to the emergency room in a hospital.